Hope, Uncertainty, and Shooting for the Stars

I’m lucky in that, for the most part, I don’t have trouble falling asleep. I am, of course, perpetually exhausted, which probably plays a role, but I like to think I learned a thing or two from my months-long bout of insomnia.

It was the summer of 2017. It took me hours to fall asleep, even with my nightly dose of melatonin. I’d racked up a ridiculous amount of sleep debt, so it wasn’t that I was buzzing with energy. I wasn’t stressed or overly anxious about the state of the world. I just … couldn’t. And the worst part was that nothing seemed to help. A technology-free nightly routine? Meditation? Progressive body relaxation? It was a big thumbs-down from my addled brain.

Eventually, I learned to let my mind wander, which felt counterintuitive. What happened to counting sheep? But my brain knew what it needed. I was intent on caging my thoughts when I really needed to let them run wild.

I couldn’t sleep the other night, so I turned to my trusty, “break in case of emergency” survival kit. I let my mind wander. And, because I’m me, one of my first stream-of-consciousness thoughts was “Oh, to live in a studio apartment in the Twin Cities with my cat and my creative work!”

Milliseconds later, my overachiever brain kicked in: “Well, if that’s what you want, you better get hustling.”

“Let’s be realistic,” said my wizened adult brain. “You can change a lot of things about your life, but you can’t change your SMA. And SMA is definitely going to keep you from this light, airy, metropolitan studio apartment.”

My thoughts were in wander mode, so I ping-ponged from despair to stubbornness to the possibility of a cure.

My wizened adult brain reappeared with a scoff. “Oh, c’mon. You know a cure is never going to happen.”

“Never say never,” said my optimist brain, otherwise known as Manic Pixie Dream Girl.

My thoughts were wandering, so I started to formulate a video game metaphor. (Which is ironic, because I haven’t played video games in months. Oh, to be finished with revisions so I can return to some semblance of work-life balance!) You know when you try to access the endgame, but can’t because you’re level two and the final boss is level 20? Maybe a cure for SMA is, in gaming parlance, “locked.” I’m only level 25, after all. Maybe, in the video game of my life, cures are only available to players level 50 and above.

Or maybe cures aren’t included in the base game, and I need to buy an expansion pack. Maybe the developers are hard at work on the next story patch, and the fanbase needs to learn some patience.

The metaphor is flimsy. I get that. But I’ve been thinking about it a lot. I’ve never put much stock in cures. They don’t feel real to me. Even if one were to mysteriously appear on my bedside table in the middle of the night, it’s not like I’d know what to do. SMA is all I know. I would seriously fail at being an able-bodied person.

But there’s magic in maybe. In someday. In you never know. In I doubt it, but I’m not against the sudden joy of being surprised.

I often return to Rebecca Solnit’s wisdom: “Hope is an embrace of the unknown and the unknowable. … Hope locates itself in the premises that we don’t know what will happen and that in the spaciousness of uncertainty is room to act.”

I don’t know what will happen, but in that spaciousness of uncertainty is room to act.

I don’t put stock in cures, but the magic of maybe is that it allows me some much-needed hope.

I probably won’t get my light, airy, metropolitan studio apartment with floor-to-ceiling windows and a breakfast nook. SMA has — as much as I hate to admit it — made that impossible. But that doesn’t preclude me from living out the rest of that dream. I have a cat. I focus a little too much on creative work. In a post-pandemic world, I can lean into the very best version of myself, the one who writes in downtown coffee shops and frequents the local art museum.

I don’t know what will happen. But in that spaciousness of uncertainty is an opportunity to play, to dream big, to shoot for the farthest of far-flung stars.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.